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		<title>《45歲那年與MSA簽下的契約》— 龍先生</title>
		<link>https://taiwan-msa.com/ooo-%e7%97%85%e5%8f%8b/</link>
		
		<dc:creator><![CDATA[agent30]]></dc:creator>
		<pubDate>Tue, 16 Jun 2026 06:43:48 +0000</pubDate>
				<category><![CDATA[心路歷程]]></category>
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					<description><![CDATA[<p>《45歲那年與MSA簽下的契約》 我本身雖然沒有遇過誤診，但自己想了又想，不論我再怎麼描述症狀，聽起來的確都很 [&#8230;]</p>
The post <a href="https://taiwan-msa.com/ooo-%e7%97%85%e5%8f%8b/">《45歲那年與MSA簽下的契約》— 龍先生</a> first appeared on <a href="https://taiwan-msa.com">臺灣多重系統退化症 (MSA) 病友聯誼會</a>.]]></description>
										<content:encoded><![CDATA[<p><span style="font-weight: 400;">《45歲那年與MSA簽下的契約》</span></p>
<p><span style="font-weight: 400;">我本身雖然沒有遇過誤診，但自己想了又想，不論我再怎麼描述症狀，聽起來的確都很像帕金森氏症或小腦萎縮症。這兩種疾病的初期症狀實在太類似了，也難怪醫生的診斷有可能不夠精確。我聽過好幾個病友分享類似的經驗，那種感受真的很不好受，畢竟沒有人被誤診會高興的。這正說明了「症狀敘述」有多麼重要，對患者與醫生的影響都很大。</span></p>
<p><span style="font-weight: 400;">不過，如果從現實層面來看，這對生病的人影響似乎又沒那麼大。從我生病這麼久以來的觀察，這個病就是按照退化的進程，跟著時間慢慢失去身體機能。目前醫學上沒有任何可以治療的藥物或方法，就已知層面而言，沒有方式可以加速或延遲退化。因此，診斷結果對病情的實質影響或許不大，充其量、了不起應該說，那只是讓人「從一個深淵掉進另一個深淵」，心裡充滿了不爽與無法接受而已。</span></p>
<p><span style="font-weight: 400;">以我來說，生病至今已經滿七年了。往回推算，我發病時才45歲。那時候一知道要與這個疾病相處一輩子，心中想著：我還年輕、還有大好的時光，對於這樣的結果，我永遠也無法接受。就算是七年後的現在，我依然無法接受，只是現實逼得我不得不低頭。</span></p>
<p><span style="font-weight: 400;">回想當初，我是怎麼走到醫院、並診斷出這個病症的呢？</span></p>
<p><span style="font-weight: 400;">起初，我好像突然「跳不起來」了。我以前很擅長也很喜歡立定跳遠，有一天我認真要做這個動作，居然做不到了，就是怎麼也跳不出去。那天晚上我去找客戶閒聊，他聽了我的敘述，隨手拿了一條跳繩讓我試試。沒想到我居然搞不定、不會跳了。繩子甩了過來，我的雙腳卻像黏在地上似地動彈不得；要不然就是身體跳起來了，落地時卻直直落下，身體完全無法做出緩衝動作，承受了很大的震動。當時我還不以為意，安慰自己只是太久沒運動、技巧生疏，肌肉有些僵硬罷了。</span></p>
<p><span style="font-weight: 400;">後來發生的另一件事，現在回想起來也是相關的。有天我正一邊講電話、一邊閒晃，看到旁邊有一張椅子，心裡想著要踩上去，卻突然踩空摔倒。當時為了面子，也怕嚇到電話那頭的客戶，我還很帥氣地維持著摔倒的姿勢，繼續若無其事地跟對方講話，直到家人走過來救我、把我攙扶起來。對於這種毫無緣由、抓不到頭緒的跌倒，我當時依然不以為意，只當作是一時踩空，並沒有放在心上。</span></p>
<p><span style="font-weight: 400;">直到後來，我過著正常生活過著過著，有一天說話突然變得大舌頭、字句都講不清楚了。這要怎麼跟人家溝通啊？這下我才真正害怕起來，急忙跑到地方醫院掛號檢查。</span></p>
<p><span style="font-weight: 400;">當年的醫生聽完我的敘述後，推測可能是小腦萎縮，便幫我轉診到大醫院做進一步確認。於是我轉到了長庚醫院，看了兩次門診，醫生雖然也懷疑是小腦萎縮，但還是建議我到其他醫學中心再確認。最後，我去了榮總做更詳細的檢查，這次安排了住院，才終於確診是小腦萎縮症。只是直到現在，依然找不到發病的原因。</span></p>
<p><span style="font-weight: 400;">這一路兜兜轉轉的確診過程，前後整整花了我半年的時間。</span></p>The post <a href="https://taiwan-msa.com/ooo-%e7%97%85%e5%8f%8b/">《45歲那年與MSA簽下的契約》— 龍先生</a> first appeared on <a href="https://taiwan-msa.com">臺灣多重系統退化症 (MSA) 病友聯誼會</a>.]]></content:encoded>
					
		
		
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		<title>A wonderful serenity has taken possession</title>
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		<pubDate>Thu, 12 Feb 2026 08:58:27 +0000</pubDate>
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<p>Etiam rhoncus. Maecenas tempus, tellus eget condimentum rhoncus, sem quam semper libero, sit amet adipiscing sem neque sed ipsum. Nam quam nunc, blandit vel, luctus pulvinar, hendrerit id, lorem. Maecenas nec odio et ante tincidunt tempus. Donec vitae sapien ut libero venenatis faucibus. Nullam quis ante. Etiam sit amet orci eget eros faucibus tincidunt. Duis leo. Sed fringilla mauris sit amet nibh. Donec sodales sagittis magna. Sed consequat, leo eget bibendum sodales, augue velit cursus nunc, quis gravida magna mi a libero. Fusce vulputate eleifend sapien. Vestibulum purus quam, scelerisque ut, mollis sed, nonummy id, metus. Nullam accumsan lorem in dui. Cras ultricies mi eu turpis hendrerit fringilla. Vestibulum ante ipsum primis in faucibus orci luctus et ultrices posuere cubilia Curae; In ac dui quis mi consectetuer lacinia. Nam pretium turpis et arcu. Duis arcu tortor, suscipit eget, imperdiet nec, imperdiet iaculis, ipsum.</p>The post <a href="https://taiwan-msa.com/a-wonderful-serenity-has-taken-possession-3/">A wonderful serenity has taken possession</a> first appeared on <a href="https://taiwan-msa.com">臺灣多重系統退化症 (MSA) 病友聯誼會</a>.]]></content:encoded>
					
		
		
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		<title>A wonderful serenity has taken possession</title>
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		<pubDate>Thu, 12 Feb 2026 02:51:29 +0000</pubDate>
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<p>Etiam rhoncus. Maecenas tempus, tellus eget condimentum rhoncus, sem quam semper libero, sit amet adipiscing sem neque sed ipsum. Nam quam nunc, blandit vel, luctus pulvinar, hendrerit id, lorem. Maecenas nec odio et ante tincidunt tempus. Donec vitae sapien ut libero venenatis faucibus. Nullam quis ante. Etiam sit amet orci eget eros faucibus tincidunt. Duis leo. Sed fringilla mauris sit amet nibh. Donec sodales sagittis magna. Sed consequat, leo eget bibendum sodales, augue velit cursus nunc, quis gravida magna mi a libero. Fusce vulputate eleifend sapien. Vestibulum purus quam, scelerisque ut, mollis sed, nonummy id, metus. Nullam accumsan lorem in dui. Cras ultricies mi eu turpis hendrerit fringilla. Vestibulum ante ipsum primis in faucibus orci luctus et ultrices posuere cubilia Curae; In ac dui quis mi consectetuer lacinia. Nam pretium turpis et arcu. Duis arcu tortor, suscipit eget, imperdiet nec, imperdiet iaculis, ipsum.</p>The post <a href="https://taiwan-msa.com/a-wonderful-serenity-has-taken-possession-2/">A wonderful serenity has taken possession</a> first appeared on <a href="https://taiwan-msa.com">臺灣多重系統退化症 (MSA) 病友聯誼會</a>.]]></content:encoded>
					
		
		
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<p>Cras dapibus. Vivamus elementum semper nisi. Aenean vulputate eleifend tellus. Aenean leo ligula, porttitor eu, consequat vitae, eleifend ac, enim. Aliquam lorem ante, dapibus in, viverra quis, feugiat a, tellus. Phasellus viverra nulla ut metus varius laoreet. Quisque rutrum. Aenean imperdiet. Etiam ultricies nisi vel augue. Curabitur ullamcorper ultricies nisi.</p>
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<p>Etiam rhoncus. Maecenas tempus, tellus eget condimentum rhoncus, sem quam semper libero, sit amet adipiscing sem neque sed ipsum. Nam quam nunc, blandit vel, luctus pulvinar, hendrerit id, lorem. Maecenas nec odio et ante tincidunt tempus. Donec vitae sapien ut libero venenatis faucibus. Nullam quis ante. Etiam sit amet orci eget eros faucibus tincidunt. Duis leo. Sed fringilla mauris sit amet nibh. Donec sodales sagittis magna. Sed consequat, leo eget bibendum sodales, augue velit cursus nunc, quis gravida magna mi a libero. Fusce vulputate eleifend sapien. Vestibulum purus quam, scelerisque ut, mollis sed, nonummy id, metus. Nullam accumsan lorem in dui. Cras ultricies mi eu turpis hendrerit fringilla. Vestibulum ante ipsum primis in faucibus orci luctus et ultrices posuere cubilia Curae; In ac dui quis mi consectetuer lacinia. Nam pretium turpis et arcu. Duis arcu tortor, suscipit eget, imperdiet nec, imperdiet iaculis, ipsum.</p>The post <a href="https://taiwan-msa.com/a-wonderful-serenity-has-taken-possession/">A wonderful serenity has taken possession</a> first appeared on <a href="https://taiwan-msa.com">臺灣多重系統退化症 (MSA) 病友聯誼會</a>.]]></content:encoded>
					
		
		
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